This captures an aspect of accommodation models that really frustrate us. They encourage individualized responses to structural design problems. Instead of designing by default for “proven needs” well-known in disability and neurodiversity communities, accommodations models require individual episodes of forced intimacy, repeated over and over and over for the rest of your life. We should treat each episode of forced intimacy as a stress case that puts our designs to the test of real life.
Forced intimacy is the continuous submission to patient hood required to access the right to learn, work, and live differently. K-12 SpEd families, higher ed students, and workers needing accommodations regularly experience forced intimacy. Forced intimacy “chips away at your soul. Every box you tick, every sentence about your ‘impairment’ and ‘needs’ becomes part of the narrative of your identity.”
Our industry tends to call these edge cases-things that affect an insignificant number of users. But the term itself is telling, as information designer and programmer Evan Hensleigh puts it: “Edge cases define the boundaries of who and what you care about” (http://bkaprt.com/dfrl/00-01/). They demarcate the border between the people you’re willing to help and the ones you’re comfortable marginalizing.
That’s why we’ve chosen to look at these not as edge cases, but as stress cases: the moments that put our design and content choices to the test of real life.
It’s a test we haven’t passed yet. When faced with users in distress or crisis, too many of the experiences we build fall apart in ways large and small.
Instead of treating stress situations as fringe concerns, it’s time we move them to the center of our conversations-to start with our most vulnerable, distracted, and stressed-out users, and then work our way outward. The reasoning is simple: when we make things for people at their worst, they’ll work that much better when people are at their best.Design for Real Life
School IEPs are a treasure trove of stress cases and structural problems currently treated individually. Let’s design for pluralism instead of putting us through a soul-chipping accommodations process that, at best, patches over bad design driven by “artificial economies of scarcity”.
What you can’t know unless you have #disability is how all the paperwork chips away at your soul. Every box you tick, every sentence about your “impairment” and “needs” becomes part of the narrative of your identity…Gill Loomes-Quinn on Twitter
Bascom tells me that experiences like ours happen because disability service systems are never designed to support people with disabilities but are “about managing access to scarce resources. We start with the assumption that these resources are limited, so you have to prove over and over again that you need them more than anyone else. If we as a society invested more resources in supporting people with disabilities, we could redesign our systems accordingly.”I Shouldn’t Have to Dehumanize My Son to Get Him Support | The Nation
Invest in care, and design for real life.
Regardless of how inclusion is conceptualised, current practice and policy for including neurodivergent learners has strongly focused on adaptations and supports at the level of the individual. For example, a pupil with a dyslexia diagnosis getting tailored reading instruction, or providing written activity instructions for children with working memory difficulties. Planning and implementing support is often reactive, and focused on “fixing” perceived “problems” (though schools, children, and families may not agree about what is a problem, or what to do). On one hand, this individual-level focus sounds like a logical way to secure the corresponding supports for people’s challenges. On the other hand, this strategy is increasingly unsustainable in the current context, when each classroom will have multiple pupils with neurodevelopmental differences, and multiple sets of mandated supports that may be difficult or impossible to deliver concurrently within existing resources.
Approaching the cognitive, social, and sensory needs of this pupil group in terms of “accommodations” “adjustments” and “exceptions” also unhelpfully obscures the fact that all learners have needs at school. Mainstream education successfully meets the needs of many learners, much of the time. However, “education as usual” isn’t immutable; it represents certain values and choices. Making different choices about teaching and school environments could support a different set of needs as standard, not as exceptions—and hopefully meet more learners’ needs overall. Workshop contributors were strongly in agreement that implementing approaches that meet a wider range of needs can benefit all learners.Guidance Part 1: An Introduction to School-level Approaches for Developing Inclusive Policy – Belonging in School – a school-level resource for developing inclusive policies
“Accommodation” implies a sort of permission, something granted to another person. It suggests that there’s something abnormal about a disabled person that requires extra effort. In the case of the ADA, people fighting accessibility requests in some contexts can cite the “undue burden” standard, which states that if something is too costly or technical to implement, it can be denied, with an alternate accommodation proposed instead. Disabled people under this framework become a nuisance to be checked off: install HVAC, finish flooring, equip elevator.The Future of Design Is Designing for Disability | The Nation
People generally are very pleased with themselves when they have made an accommodation for me. I know this because they proudly announce it! In turn, I have learned to say thank you when people announce their thoughtfulness at making an accommodation for me. I truly am thankful because it allows me a fuller participation in the events going on around me. It also makes me smile because I have been making accommodations for people my whole life and it has never occurred to me to announce it!
The fact is that autistics are required to make numerous accommodations every day they are among other people. This is because the world is not set up in a neurologically friendly way to autistics. We live in a very fast paced world where speed in understanding and responding to people is expected. We also have much information constantly being delivered over numerous electronic devices. We expect everything to happen instantly!
For the most part this isn’t a good match for people with autism because we generally have a “too much” experience of the world due to the way our sensory system takes in information from the world around this. Once that information “arrives” it is then, for many autistics, processed differently. A common result of our difference is referred to as a processing delay. This means it takes more time for us to process and respond. Not only is this is a huge disadvantage in our fast paced world of instant expectation, but one unspoken assumption is that I will accommodate for my differences and act “appropriately,” i.e. act as a neuro majority person acts.
It takes time and energy to accommodate another person regardless if you are the person with autism or the person without autism. Based on years of observation of numerous autistics, myself included, I can see autistics pay a much higher cost for the accommodations they must make as compared to the neuro majority person. Part of the reason is the sheer volume of accommodations an autistic is required to make each day compared to others. The really funny part of this is that autistics rarely are in any way acknowledged for the heavy burden of accommodations they must make just to survive in this world while others are thought to be the people making the accommodations! Furthermore, I am expected to make accommodations for you while you have the option to choose when, if, and how often you will make accommodations for me.
This differential is a result of assigning the measure of normal to the experience of the majority of the people. Even though I make considerably more accommodations for you than you make for me, because your experience of the world is considered the norm and my experience the deviation it is the understanding of the majority that I need you to accommodate me and this is true. However, nobody notices all the accommodating other autistics and I have done all our lives!Autism, Accommodation and Differential Expectations | Judy Endow
The movement for neurodiversity is not interested in homogenizing experience. We are different and we require different accommodations.
In any classroom I’ve ever taught, I would say at least 50 percent of students don’t work well with the norm. This may be clearer for me than for other professors because I teach in studio art, where students who have different modes of learning have already been funnelled. But my experience is not limited to fine art students: it also includes students in the wider humanities and social sciences. Accommodations are not complicated: facilitating a classroom organization which is not completely frontal and allowing participation to occur in ways that don’t privilege eye-contact, or allowing for and even generating movement in the classroom are two simple techniques. The accommodations are not mine to make but ours to invent, and each class will do it differently depending on the needs of the participants.Histories of Violence: Neurodiversity and the Policing of the Norm
“Sure,” they say, “with enough humiliation we can allow you to do things differently, as long as you understand that we’ll never consider you an equal part of the school.”
UDL wants to change that.
A decade ago the Centre for Applied Special Technology (CAST) proposed 3 principles that could be applied to the curriculum and set an agenda for inclusion, as follows:
- Provide multiple representations of content.
- Provide multiple options for expression and control.
- Provide multiple options for engagement and motivation.
and these remain essential, but I want to add a fourth which must apply to them all:
- That these representations and options be available to all students on the basis of understood needs and/or informed preference, without the need for diagnosis.
And here is my example – which, again, I have used before:
I often hand out reading assignments to students. When I do I always deliver those digitally. They arrive as accessible text documents, delivered to their computer. Many students, as many as half of the students, print these documents out onto paper. They do this because they prefer it that way. Whether because of their eyesight, or their cultural training, or where they want to read, or how they want to take notes or highlight things, they prefer ink-on-paper.
That’s fine. I have never once said, “You can not do that. You must read that on the computer, or listen to it using text-to-speech software.”
But if I, as a dyslexic student, want to take my ink-on-paper textbook and convert it into digital accessible text, this gets difficult. I have to “prove” my disability to some campus bureaucrat. I have to beg for the accommodation. I need lots of time, special software and perhaps hardware, and sometimes special permission to bring that book into class (see all those profs who ban laptops or mobiles). I may need a copyright exemption. And look out if I want to carry that digital text into an exam!
This is not just privileging one media form over another, this is elevating the “how” over the “what” to an extreme extent. It not only humiliates those labelled with “disabilities,” it refuses to accommodate the very legitimate choices of all students. Choices which might significantly improve the comfort, attention capabilities, and learning opportunities for that 60%-65% who currently fall far behind, and might even help those already doing well to achieve their full potential.
UDL says scrap that system. Under UDL content would be fully flexible in delivery. Want that book on paper – here it is. Want it as an audio file – there you go. Want it as digital text – that’s easy – seen a book lately that did not begin as a digital file? Need it in some other form – pictures or braille or whatever? No problem – as long as the content can be delivered.
UDL should really go further – especially in recognizing that not all students benefit from following the same path to skills and knowledge. Any system which applies the same pedagogy to all students is clearly not a universal design (in my mind it is not even moral). Insisting on everyone using the same textbook, or doing the exact same assignments, or following the same schedule – those are all industrial practices which are based in the belief that students are a raw material which can be shaped by repeated stampings. Any claims to some kind of rational meritocracy within that “same requirements” argument are simply a mask for the essential anti-humaness of the system.SpeEdChange: Considering Universal Design
Every classroom that penalizes students for distributed modes of attention organizes learning according to a neurotypical norm. Every classroom that sees the moving body as the distracted body is organized according to a neurotypical norm. Every classroom that teaches predominantly for one mode of perception is organizing its learning according to a norm. Every classroom that knows in advance what knowledge looks and sounds like is working to a norm.Histories of Violence: Neurodiversity and the Policing of the Norm
She didn’t give him an opportunity to choose what intervention would work best for him. She chose it, she gave it to him, and then he felt shamed. When we make decisions for another human being, when we tell them you need this, when we say your deficit is this so i’m going to assign you this, then there’s that shame. There is a guilt that comes in, there is a message that is sent to the learner over and over again, that I’m not good enough, that i can’t learn like everyone else, and I don’t belong here.What is anti-racist Universal Design for Learning (UDL)? feat. Tesha Fritzgerald – YouTube
Allow learners to be the experts on themselves and to have a menu of supports to choose from so that they will know that they can get what they need.On Honor & Excellence in Education w/ Tesha Fritzgerald – YouTube
We can’t always prescribe the intervention or the support, but we have to have a menu that every learner understands that they can choose from it to see exactly what they need.
We think ahead for the predicted supports that would be needed and then we allow learners to pick and choose what they need.
And we would be surprised. I know I’m often surprised when I give a menu of support, and I think that some of my students would choose one, maybe. They choose three, where I would only think one would work for them. Maybe they go through all of the resources, when I would think that they would gravitate towards one kind.
And so that’s the beauty of a universally designed learning environment that thinks ahead to what would be the barriers for learners. And, as we learn them, as we listen to their voices, we learn more about what they need, and then we make those supports available to all the learners in the environment.On Honor & Excellence in Education w/ Tesha Fritzgerald – YouTube